Hi everyone hope you all doing okay, been in hospital myself on and off due to low hemoglobin ended up having 6 pints blood and 1 pint of iron I also know have hepatic encephalopathy 3 bad episodes wondering how others manage with this condition, as I don't remember any of it it's a good job I was in hospital at the time as I was doing things not in my naturemi have been put on lactolouse and a med to take twice daily grateful for any advice. Annette
Hepatic encephalopathy: Hi everyone hope... - British Liver Trust
British Liver Trust
Hi, I have no advice, its not happened to me yet, plenty has, 3 times of almost bleeding to death. I've blacked out from low serum sodium. I understand how much you must be concerned for yourself though. I am happy you made it through all of that, sounds tough and frightening. I do believe how we eat, our choices of fluid and fuel is paramount to keeping it from happening. I am on no medications but a tiny dosage of beta blockers for keeping the pressure down in my varacies. I hope you have help and you are able to rest well.
Hi, Don't know if this will help but my partner has had HE a couple of times & like you luckily he has no recollection. The Lactulose & Rifaxamin appear to be keeping things running smoother at the moment. Good Luck.
Hi,I would suggest a diet with lots of fiber to keep your stools regular,no heavy proteins like meat or fish.Porridge,buckwheat,starchy vegetable soups with split peas (potatoes,parsnip,sweet potatoes,etc.)Pasta/whole wheat pasta.Yoghurt,cottage cheese and a little full fat yellow cheese for the protein.In one word -make it easy for the liver to process protein and avoid constipation.hold on!xx
Also very important - don't skip meals,eat little and often.Not to overeat,not to go hungry.
Thanks thewayforward for advice am starting to eat more fibre now. Annette
Protein is a must with liver disease.
Absolutely,but it's hard for the liver to digest proteins from meat and fish sources. So it's better to replace it with protein from peas and legumes,and starchy vegetables that full of complex carbs -easy to digest and gives energy to the body.In case of encephalopathy.
Protein whilst neccessary to survive!! can lead to increased H.E. the protein turns to ammonia which causes HE a nice thick steak (or a good gastric bleed) both are bad for H.E. (I was told)
Thanks PCB pbc my consultant told me to eat protein confusing you don't know what to do. Annette
would like to know if you still drive.
i surrendered my license about Dec 2013, had really bad and mad HE through to Nov 14 when I had TX, and was back on the road 3 - 4 months after TX
I am not as alert as I used to be (being 62 doesnt help!) but I can and do drive, taking a little extra caution now than I used to do which is no bad thing.
I still get very fatigued, on a longer journey I am prepared to snooze in my quilt (always in car) for an hour if the mood takes me (and it does)
Sorry to hear this news Annette. I also have this diagnosis - but only mildly. I am on lactulose but no hospital admissions. Some days I am more confused than others. I am reading responses to you quite keenly as I do not know a lot about this diagnosis.
Hi gamesmaker I got it in hospital very unwell at the time needed loads of blood transfusions and iron infusion that's how low I got, HE started there apparently I left the ward at 1am and walked to A+E door should have been locked I would have thought, I do not remember any of this did more stupid things on ward that night but no memory of it, trying my best to keep on top of it. Annette
do you still drive a car.
yes I do drive still. I do not think HE is on the banned list of conditions. I only drive on local roads - and then only if I feel well. Long distances I take the train or the plane. I have not read any definitive guidance about this.
I have cared for my mum for the past 4 years (Lipodystrophy caused her cirrhosis) & she has had regular bouts of this for the past couple. We manage hers through Rifaxamin, senna at night & varying her Lactulose dosage now we know the signs. It is best to drink as much fluid as possible to help flush out the ammonia as well. She was admitted to hospital for the first episode, but now I know the signs to look for it does make it easier & you can stop it from getting too serious. Hope you find this useful.
Lactulose & Rifaxamin are a must to help you, regular eating, regular Poo's and it helps if folk just go along with you without giving there opinions which can trigger you to react...try & keep as stress less as possible and if you have Acicis (spelling?) get a drain regular at the hospital...your consultant will organise or if not try your GP..its all about clearing the Toxins that build up..Hope that helps
Hi ya my hubby had to have 4 pints of blood in december hes HE for 2 years now taking lactoluse belps alot as to get rid of the toxings in your Brain.
I find if he does too much he tends to get really tired an asnt got alot of energy so i make him get some rest he like going out there an every where if its nice.
Hes very switched on since taking lactoluse i make sure he as evety day with his meds.
Hi angse so sorry to hear about your recent stay in hospital and now your H.E diagnosis. I have suffered with this awful effect for over 2 years now and have been in and out of hospital so many times. My last bout last October was my worst, they kept me in hospital for 6 weeks I was put on a no salt diet and had to limit the amount of fluid intake. Regular exercise also this is the longest period I have not been in hospital due to them easy changes. Whatever you do don't drink too much fluid as your body will hold on to it and cause you ascites which can also cause the toxins which will give you another bout of H.E. Stay away from people with infections as if you caught it that could give you a bout as well. Hope you feel better soon x
Thanks jojokarak I also have acistes consultant at hospital told me to drink water whenever I am thirsty as he said that also causes HE if you don't drink enough, I was admitted with very low blood levels got HE while I was there it's very scary as you know I have severe breathing problems that limits exercise they are doing tests to find out why, I will have to ask what exercise to do as I really miss going out for walks thank you for your reply. Annette
hi sorry to hear that i have it mildly as well gets very confusing at times and irritable im on lactolose 20ml 4 times a day they say but ive been having it 2 times a day seems enough at the moment hoping all goes well
Hi I had encephalopathy n went into a coma , luckily my partner phoned hospital n I was there for 3 weeks I had liver failure but the way I understand it if it's gonna happen it will , make sure your always hydrated, very important that , I was already on the transplant list but was took of while I was in hospital, got put back on when discharged , I also had asites n Odema, wasn't in a good place , but someone was looking down on me n I had my transplant in Aug , hope your feelin a bit better asap, all the best x
Hi angse, I'm so sorry to hear you've had problems with anaemia again and now HE, sounds very scary. In fact I was thinking of you, and Julie who lives alone in Wales, because I was at my GPS and they had a leaflet about a medical alert buzzer thing you can wear to alert someone if you need assistance. It worry's me you and others are so unwell and on your own, I wonder if this could be something you could look into. At least then if you had a bad turn, you'd know someone would be on there way to you without having to call an ambulance etc.
I hope your meds and new high fibre diet will keep it at bay, and you don't get further episodes.
Hi, its nice that you thought of me and Annette living alone with this illness. I hope Annette that you start to feel better soon. I only notice I've done strange things when I find objects in the wrong place, after the event and I've gone into town and not remembered going. I've also taken too much medication forgetting I have taken it already. I will look into that alert system. I have keysafe on outside of my bungalow so trusted people who know the code can unlock my front door with a key. Lots of love Annette and E
Yes it was jules it makes life so much better to know that people care I will look into those buzzers, only thing is I don't know when I need help I don't have any awareness of the HE coming on. Annette
Hi Annette, I agree it would safe a lot of hassle if we knew we were going a bit HE but I don't get warning either. Finding Lenor fabric softener in the fridge was a classic. Not funny at the time though
Mum always says she notices that it takes her longer to string a sentence together & her movements take longer than normal when she's starting to have a bout (feels like she wading through water moving & thinking). I personally notice it before her as it takes her ages to eat a meal or even just to put her coat on. The alert systems are ideal if you're alone for any period of time, as once an episode takes hold it can take a few days to get over it (longer depending on severity). She also notices that she feels sleepy the majority of the time when she's suffering. Ascites can be managed through a low sodium diet, paracentesis (drains) or other medication so please make sure you drink enough.
Thank you I will was told by consultant not to limit water, even though I have Ascites he said going limited makes HE worse I usually go to bed then apparently doing all sorts of crazy things it began in hospital thank goodness I had 3 episodes in there am now on rixamin and lactulose hope your mum doing OK. Annette
Hello Angse. What a terrible time you have been through. I have only got mild HE at the moment but I do get confused - especially with electricals - I pick up my mobile phone and the TV remotes and try to work out which one I need and what I am meant to do with it. Even working out how to turn the TV on can confuse me some days. Some days are worse than others for concentration levels. I also have the problem of being awake all night (until 5 am) and can sleep anywhere in the daytime. On a practical level I am still getting nausea and vomiting - and I have to be careful what I am doing for the timing of my lactulose otherwise it can be quite embarrassing! If I am out in the daytime I take it when I get home. My GP said it was OK to miss it out some days for social reasons. I am a little anaemic but nothing like your level. I also have oedema of the lower limbs which I think is part of the picture. I wrote to the consultant as I had so many questions to ask - he said he would happily see me in the clinic for an extra appointment, but his secretary said there were no gaps at all! Fortunately I see him in June anyway.
Keep in touch!
Hi gamesmaker funny enough I see my heptologist in June at kings college London, can't wait to hear what he says of what happened to me, I just hope the rixamin and lactolose helps, keep as well as you can we can only be as strong as we can be when we are sick like this,vi also get nausea and sickness I wonder why? Annette
Annette, I had "Chronic H.E. " but I suspect every ones journey is unique, I relate to gamesmaker's description, my experience may sound worrying, but at the time I was quite OK with it! I used to run my own hi tek company, post PBC induced liver failure I was unable to type a paragraph without 20 errors in it, I could not remember my own (land line) tel. number, the name of my neighbour and good friend, etc. then on other days things were back to near normal, I slept in the day but never at night, i got very angry with frustration at not being capable (like I used to be) this was worse until I came to realise the problem was H.E. and not "Me" , Lactulose and Rifaximin helped, I also found that Citaloprim (anti depressant, SSRI) modified my mood swings, and I was quite happy rather than angry etc. The main effects were
Lack of inhibition, and with that some odd behaviour!! odd behaviour could land me in trouble, inappropriate language when I was in pain and was lying on floor in hospital A&E (no trollies, they demanded I sit on chair, I had just fallen 12 feet and could not sit on chair - I errupted with language, I had no inhibitions to stop me! ) or amusing (to me) singing songs in shop loud enough to be heard by other shoppers, singing as I answered door, postman liked the happy sounds! singing like a child, no inhibitions again.
Lack of balance! see fall above!
Lack of memory, concentration, ability to compute,
In fact once I let go and accepted I was "useless" and relaxed, relying on my very understanding wife to take charge of everything, I enjoyed the lack of inhibitions and near total uselessness of my position.
I guess I was fortunate to have the support I had, but I was that far gone, I would have failed on my own, unable to figure out how to answer mobile phone, even after i had bought a new "simple" phone......
Not everyone gets it so badly, I suspect gamesmaker will recognise some of MY symptoms....
Hope you manage, if you ever want to talk, I am happy to listen and even try to help, H.E. is something I want to highlight as many Drs. know little about it especially in its severe form.
Good luck ! Charlie.
Thanks for your support. How I wish my husband was still alive to be there for me. Interestingly I have had a few episodes recently when I felt wobbly on my legs and stumbled to one side or the other (not always the same side) but I had not thought they were to do with the H E - maybe they are? I am going to start a written list to take with me to the hospital so that my questions can be answered without me forgetting what they were!
Good luck Charlie and Annette
Hi Annette and all others that posted with regards annettes HE worries. I posted something brief about finding fabric softener in the fridge but on more serious note go along with a lot Gamesmaker said. I tend not to want to go to bed as body not wanting sleep, people have said to me on telephone I sound slightly drunk even though I dont drink, typing e mails and getting spelling wrong way round ie, spelling words backwards and I get a peculiar headache on one side of my head which I only realised today when I've looked back at warning signs. I gave up lactulose a few years ago as the side effects on me were rough. I can get my words mixed up and do so on a daily basis almost stuttering but I excuse myself to others by saying "I'm a bit scatty today". I keep a diary now doing a page a day so I can look back and notice even my handwriting changes quite significantly on bad days. Hope Annette you have found some interesting feedback from your post as I certainly have, best wishes
Thanks Julie you have been a great help as has everyone here I am blessed to belong to this group where people care for each other, me to scared to go to bed at night as when in hospital I got up and wandered everywhere not remembering a thing 3 times that happened so now I'm home I lock front door from inside and hide key as I live just opposite a river, anyway consultant put me on strong tabs to try and prevent it so feel a it secure now, how are you these days. Annette
Hi Annette, I'm as ok as ok can be at the moment. Having another scan next Thursday after seeing hepatologist recently. Still self catheterising and seeing urologist for his comments after having ultrasound on pelvis (found a grossly disstended bladder.) Seeing him 6th June and have been able to manage to find someone nice to come with me as he isn't a very pleasant man. Not sure if any treatment possible. Started on Bisoprolol beta blocker last week to help lower portal pressure but sleeping is a major issue. Nice of you to ask how I am. You are always caring though. Apart from your HE, you have been through it lately havent you. Hope you start feeling better. I know its a chore but I'm so glad I keep a daily diary as I put absolutely everything in it. Whats happening, how I feel, who I've spoken to, what jobs I need to do etc etc. We shall keep plodding on and your right, this site does have some great people on here. I don't google anymore after joining here a year ago.
love julie xx
Yes Julie your right I don't Google anymore either, hope all goes well for you with your appointment glad someone with you, sometimes we all need backup, other then that we have to keep going on as ill as we are, I am still very weak so haven't ventured outside yet not even the garden, I think red blood cells dropped so low it really took it out of me but I will get there, let me know how things go for you look after yourself. Annette
Thanks Annette for your kind thoughts. I will post on here after I have seen the consultant.
Hi Annette. It is the confusion I hate at the moment. I phoned my daughter in the middle of the night last night - and told her that her daughter was being attacked by internet trolls, and that I had not been able to take a screen print because it had disappeared from the screen by the time I got my camera out! It had all seemed really logical in the night - but as my daughter lives 140 miles away there was nothing she could do! Now my granddaughter is feeling guilty for upsetting me with strange pictures. Oh dear.!!
But that happens gamesmaker please don't feel guilty it's not you it's the HE know how you feel. Annette